"Preserving Your Memory" is a free magazine that often has good articles on dementia. The current issue has an article on dealing with loss that is worth reading. Though it's about dealing with losses when your loved one has dementia, I think the article applies to dealing with losses when your loved one has any sort of medical condition or when you are dealing with any sort of medical condition.

Here are some of the key points made in the article:

* We "now rely more on what we call the âdual process modelââwhere a grieving person tries to live life in the new reality while at the same time coping with a sense of loss..."

* "Grief is not about death, but about loss."

* "If grief is the conflicting feelings caused by the end of or change in a familiar pattern of behavior, then any changes in relationships with people, places, or events can cause the feelings we call grief."

* The ambiguity of caring for a living, breathing person while grieving the loss of that personâs former self can be overwhelming and confusing.

* Anticipatory grief. In this phase, caregivers grieve in the face of the disease and brace for whatâs to come.

Loss: The relationship between dementia and grief is a complicated one.Preserving Your Memory (Magazine)Winter 2012

"The risk of love is loss, and the price of loss is grief. But the pain of grief is only a shadow when compared with the pain of never risking love."-- Hilary Stanton Zunin

Elisabeth KÃ¼bler-Ross brought the subject of grief into the mainstream with the 1969 publication of her book, On Death and Dying. More than four decades later, KÃ¼bler-Rossâ five stages of grief (denial, anger, bargaining, depression, acceptance) are still used by many people as a way to categorize the complexity of loss.

However, contemporary grief experts say thereâs much more to the storyâespecially when the grieving swirls around memory loss.

âThe KÃ¼bler-Ross model was an interesting idea 40 years ago, but we now rely more on what we call the âdual process modelââwhere a grieving person tries to live life in the new reality while at the same time coping with a sense of loss,â explains Dr. Kenneth Doka, professor at the College of New Rochelle, senior consultant to the Hospice Foundation of America and author of several books, including "Living with Grief: Alzheimerâs Disease."

âGrief is not about death, but about loss,â he says. âAnd every grief is unique.â So the resulting range of emotions varies greatly, not just from person to person but even in the same person at different times.

Memory Loss Changes EverythingThe multi-faceted grief experience is even more complicated for individuals coping with Alzheimerâs disease (AD) or other forms of dementia, since there are elements of loss that occur prior to the physical passing.

In "A Loving Approach to Dementia Care: Making Meaningful Connections with the Person Who Has Alzheimerâs Disease or Other Dementia or Memory Loss," author Laura Wayman addresses the way caregivers and loved ones can feel bombarded with grief from the earliest stages of AD. She writes, âIf grief is the conflicting feelings caused by the end of or change in a familiar pattern of behavior, then any changes in relationships with people, places, or events can cause the feelings we call grief. If you are caring for someone with dementia, you are continually losing pieces of your loved one.â

Dr. Pauline Boss agrees. A clinical psychologist based in St. Paul, Minnesota, Dr. Boss is the author of the books "Ambiguous Loss: Learning to Live with Unresolved Grief" and the recently published "Loving Someone Who Has Dementia: How to Find Hope While Coping With Stress and Grief." She insists that loved ones of AD patients experience the definitive form of ambiguous loss: the type of loss that cannot be clarified or verified.

âWhen someone is struggling with memory loss, the person hasnât died but is drastically changed from who they used to be,â she says. âThe caregiver is living with somebody who is here but not here; who is legally the person they used to know and love but psychologically no longer that person.â The ambiguity of caring for a living, breathing person while grieving the loss of that personâs former self can be overwhelming and confusing.

Making matters worse, she says, is the lack of ritual surrounding the passing of memory. âWhen thereâs a death in the family, itâs verified with a death certificate and ritualized depending on culture and religion,â Boss notes. âWith memory loss, you donât have that. There are no sympathy cards, no rituals to support the people who are still here.â So-called âsurvivorsâ are left alone in their grief because the person theyâre grieving is still with them.

âCaring for a person with Alzheimerâs disease is often a series of grief experiences as you watch memories disappear and skills erode. Initially, this process can go unnoticed until difficulties impact more areas of daily life and the disease can no longer be denied. For both caretakers and their loved ones, this often produces an emotional wallop of confusion, anger and sadness. If left unchecked, these feelings can last throughout a caregiverâs long journey.â

Phases That Come and GoBecause the nature of grief is different for loved ones of AD sufferers, it arrives in stages and appears long before the personâs death. Like all patterns of grieving, there is no one sequence or chronology. However, there are three phases that many caregivers experience along the way:

Emerging grief. This form of grief might appear in the early stages of the disease, perhaps even prior to any official diagnosis. Loved ones who are noticing subtle variations in behavior can experience sadness, confusion and other emotions upon realizing that incremental changes are taking place. Dr. Ross points out that this is one of the most ambiguous stops along griefâs journey, as the loss is unclear and ill-defined.

Anticipatory grief. In this phase, caregivers grieve in the face of the disease and brace for whatâs to come. Dr. Doka notes that anticipatory grief can be profound with dementia cases. âLoved ones grieve shared memories, shared lives, the loss of what the patients can no longer do, the changing nature of their personalities,â he says. âPeople experience multiple losses along the way.â

Acute grief. The final stage of grief can begin in the final phase of the patientâs life, which can be agonizing for loved ones to witness. Then, once death occurs, new iterations of grief can take hold. Some caregivers even experience guilt at this step, questioning their own conflicted feelings of sadness and relief that the âlong goodbyeâ is finally over.

Sufferers Also SufferItâs important to remember that individuals suffering from dementia are also grieving the loss of their former selves. In the early stages of their disease, they are aware that their cognitive function is changing. The fear and anxiety they experience are forms of anticipatory grief, explains Dr. Doka. As things progress, they often display signs of uneasiness. Caregivers and family members should be sensitive to the fact that everyone touched by memory loss experiences grief.

In his moving collection of essays written after his own diagnosis, "Alzheimerâs from the Inside Out," AD patient Richard Taylor offers a first-hand perspective on memory loss. In this excerpt, he addresses the subject of grief:

What living with the disease means to me â¦ is having to die twice in front of my family. First comes the death of who I am, and second is the death of who I will become. It means having to become an almost helpless observer of the deterioration of my relationships with loved ones. It means not remembering what I said, what I meant, and what you said or meant. I have moved from forgetful to confused to bewildered; I am floating between and within the three states, and I donât know why or how or when it is going to change.

Tips for healthy grievingThere is no right or wrong way to grieve. Just as each personâs life is unique, each personâs path through grief will be individualized. In the face of dementia, the process tends to be longer and more complicated, as it begins well before death. Do whatever works for you at every step along the way.

Honor each small passing.Dr. Boss recommends creating a ritual to say goodbye when another part of an AD patient is gone. âConsider having a small ceremony with friends or family each time something new disappearsâsuch as the ability to talk or walk or eatâas a way of formalizing that passing,â she says. âLight a candle, plant a flower or send a paper crane out to sea.â

Acknowledge your grief.Dr. Doka cautions against denying such intense emotions. âGrief is okay. Itâs normal. Itâs natural to have it,â he says. âGrief can be very complex and very stressful.â The first step in coping with it is acknowledging it, whether youâre in the early or later stages of the experience.

Dismiss the myth of closure.The grieving process never truly ends, although it becomes less intense with time. Donât pressure yourself with the expectation that youâll reach a point of complete acceptance of your loved oneâs passing. Just do what you can to address your changing emotional needs as you go through your personal stages of grief so that you can live more comfortably with the loss.

Seek support.Support can come in many forms and can offer a multitude of advantages to people dealing with loss. Wherever you are in your caregiving and grieving journey, make sure you get the help you need to lighten the emotional and physical load. Individual therapy and support groups can provide an invaluable source of empathy when you need it most. Visit ALZTalk.org for online support.

Nurture yourself.Caregivers need care, even when their caregiving days are behind them. Be kind to yourself, take good care of your own health and surround yourself with friends and family. Dr. Boss counsels grieving people to do what she calls âboth and.â You "both" remember your loved one "and: you move forward with your life.

Mon Jan 09, 2012 3:42 pm

FiatLux

Joined: Thu Jan 14, 2010 2:40 pmPosts: 95Location: California

Re: Article on loss and grief

When a person's heart is still beating but a part of them "died" or started leaving many years ago, it is extremely difficult to manage one's grief as well as their response to the part that is still living. Someone asked me in 1999 what role our mastiff played in our relationship: At the time I was somewhat offended, but I recently realized that as he was "leaving," our mastiff started filling the void left in my heart. It was a totally subtle subconscious change that happened gradually over a period of many years.Praying for God's Mercy for all of us,Roxanne

_________________My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?

Roxanne (did you change your username?),I can see why you'd be somewhat offended by the question. I guess the person asking it was insightful?Robin

Mon Jan 09, 2012 5:12 pm

FiatLux

Joined: Thu Jan 14, 2010 2:40 pmPosts: 95Location: California

Re: Article on loss and grief

Yes, Robin I changed my username. And Yes, the person who asked the question had just finished 11 years of therapy - he was [and is] very insightful...Roxanne

_________________My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?

Mon Jan 09, 2012 5:48 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Article on loss and grief

FiatLux wrote:

When a person's heart is still beating but a part of them "died" or started leaving many years ago, it is extremely difficult to manage one's grief as well as their response to the part that is still living. Someone asked me in 1999 what role our mastiff played in our relationship: At the time I was somewhat offended, but I recently realized that as he was "leaving," our mastiff started filling the void left in my heart. It was a totally subtle subconscious change that happened gradually over a period of many years.Praying for God's Mercy for all of us,Roxanne

Yes--Kyrie, eleison! --Pat

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Mon Jan 09, 2012 5:50 pm

FiatLux

Joined: Thu Jan 14, 2010 2:40 pmPosts: 95Location: California

Re: Article on loss and grief

Pat ~ I know what FiatLux means but had to look up Kyrie, eleison [Oh Lord, have mercy on us]! Thanks for sharing!Robin ~ Thanks for sharing this good article!

Roxanne

_________________My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?

Wed Jan 11, 2012 4:41 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Article on loss and grief

FiatLux wrote:

Pat ~ I know what FiatLux means but had to look up Kyrie, eleison [Oh Lord, have mercy on us]! Thanks for sharing!Robin ~ Thanks for sharing this good article!

Roxanne

Roxanne, I only know it because it's in Mozart's Requiem which is my favorite piece of music.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Wed Jan 11, 2012 5:36 pm

BayouCajun

Joined: Tue Mar 29, 2011 3:02 pmPosts: 386Location: East TN

Re: Article on loss and grief

I haven't heard that in a long timeâ¦..butâ¦.it definitely is stored in thereâ¦.and solidâ¦..

_________________First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........

Tue Jan 24, 2012 5:15 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Article on loss and grief

Actually, kyrie eleison is Greek but it is the Latin transliteration from the Greek alphabet.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Tue Jan 24, 2012 6:40 pm

Tonya

Joined: Wed Mar 02, 2011 1:04 pmPosts: 251

Re: Article on loss and grief

True Pat - I stand corrected!!!

_________________First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........

Tue Jan 24, 2012 6:44 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Article on loss and grief

Robin, I neglected to thank you for posting this spot-on article about grief. It at least addresses the grief from loss we feel while our LO is still alive. And when the LO is a spouse it is a grievous loss, indeed.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Tue Jan 24, 2012 6:55 pm

rae582

Joined: Sat Jan 30, 2010 3:53 pmPosts: 41

Re: Article on loss and grief

Robyn, thanks for posting this article. It makes me feel slightly less alone in the ups and downs of grieving for my mom. I'm sometimes frustrated that the grieving is continual and ever-changing; every time there's something else Mom can't do anymore it reminds me how sad all of this is. And every time I think about my future without her I'm reminded that even though she's still physically here I'm already missing her so much. It's definitely a challenge to move forward with my life and plan my wedding while I'm dealing with losing her. I really appreciate this article, made me feel a bit better this morning!

_________________Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.

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